National Institute of Mental Health & Neurosciences

(Institute of National Importance), Bengaluru-560029

राष्ट्रिय मानष्ट्िक स्वास्थ्य एवं तंष्ट्िका ष्ट्वज्ञान िंस्थान, (राष्ट्रिय महत्व का िंस्थान), बेंगलूर -
560029
ರಾಷ್ಟ್ರೀಯ ಮಾನಸಿಕ ಆರ ೀಗ್ಯ ಮತ್ತು ನರ ವಿಜ್ಞಾನ ಸಂಸ್ ೆ, (ರಾಷ್ಟ್ರೀಯ ಪ್ಾಾಮತಖ್ಯತಾ ಸಂಸ್ )ೆ , ಬ ಂಗ್ಳೂರತ-
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FAQ on Epilepsy

What is Seizure?
Seizure is a general term and people call their seizures by different names – such as a fit,
convulsion, funny turn, attack or blackout. It can happen due to variety of reasons like low blood
sugar, liver failure, kidney failure, and alcohol intoxication among others. A person with epilepsy
can also manifest with seizure.

What is epilepsy?
Epilepsy is a neurological disorder of the brain (not mental illness) where in patients have a
tendency to have recurrent seizures. Seizure is like fever – due to various causes; while epilepsy is
a definite diagnosis like fever due to typhoid, malaria.

How many people have epilepsy?

Epilepsy is the one of the most common neurological condition and may affect 1% of the
population. Which means there are at least 10 million epilepsy patients in our country.

What causes epilepsy?

Anyone can develop epilepsy; it occurs in all ages, races and social classes. It is due to sudden
burst of abnormal electrical discharges from the brain. In a great majority of patients, one does not
know the cause for this.
The causes of epilepsy can be put into three different groups: a) Symptomatic epilepsy: when there
is a known cause for a person's epilepsy starting it is called symptomatic epilepsy. The reasons can
include head injury, infections of the brain, stroke, or a scar in the brain. b) Idiopathic epilepsy:
There is no clear cause for the seizures and is thought due to having a low seizure threshold. The
person usually has no other disabilities. C) Cryptogenic epilepsy: When it is not clear if epilepsy is
symptomatic or idiopathic and is due to a reason yet to be found. In great majority the cause is not
known.

Is it hereditary?
In a vast majority of patients, it is not a hereditary condition. Certain types of epilepsies and those
with positive family history have a greater chance of familial predisposition

Is epilepsy contagious?
Of course not. This does not spread by any close contact such as shaking hand, kissing or living
together or by sharing food from the same plate.

How is a diagnosis made?

The diagnosis is entirely on the information given by patient and more important by the on lookers
who have observed the seizure.

Are there different types of epilepsy?

There are different types of seizures. A) Partial or Focal seizures. i) Simple partial seizures:
consciousness is not impaired and the seizure may be confined to either rhythmical twitching of
one limb or part of a limb, or it can be like unusual tastes or sensations such as pins and needles in
a specific part of the body. ii) Complex partial seizures: consciousness is affected, and seizures
may be characterized by a change in awareness as well as automatic movements such as fiddling
with clothes or objects, mumbling or making chewing movements, or wandering about and general
 National Institute of Mental Health & Neurosciences
(Institute of National Importance), Bengaluru-560029
राष्ट्रिय मानष्ट्िक स्वास्थ्य एवं तंष्ट्िका ष्ट्वज्ञान िंस्थान, (राष्ट्रिय महत्व का िंस्थान), बेंगलूर -
560029
ರಾಷ್ಟ್ರೀಯ ಮಾನಸಿಕ ಆರ ೀಗ್ಯ ಮತ್ತು ನರ ವಿಜ್ಞಾನ ಸಂಸ್ ೆ, (ರಾಷ್ಟ್ರೀಯ ಪ್ಾಾಮತಖ್ಯತಾ ಸಂಸ್ )ೆ , ಬ ಂಗ್ಳೂರತ-
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confusion. The person may respond if spoken to. Complex partial seizures most often involve the
temporal lobes of the brain, in which case the person may be said to have 'temporal lobe epilepsy'.

iii) Secondarily generalized seizure: For some people either of these partial seizures may spread to
involve the whole of the brain and he/she will lose consciousness.
B) Generalized seizures: In these seizures the whole of the brain is involved, and consciousness is
lost. The seizure may take one of the following forms: i) The most recognized type of seizure is the
generalized tonic-clonic convulsive seizure, sometimes called a 'grand mal' seizure. In the first part
of the seizure the person becomes rigid and may fall. The muscles then relax and tighten
rhythmically causing the person to convulse. At the start of the seizure the person may bite their
tongue or cry out. Breathing may become laboured and they may be incontinent. After the seizure
the person may feel tired, confused, have a headache and may need to rest to recover fully. ii)
Absence seizures: occur commonly in children and are often referred to as 'petit mal'. The person
experiences a brief interruption of consciousness, unresponsive with blinking of eye lids lasting 5 –
15 seconds iii)Juvenile Myoclonic Epilepsy (JME): This is usually seen in young persons aged 10-
12 years and consists of sudden jerky movements of the hands resulting in dropping of objects like
tooth brush, coffee cup etc and at times jerky movements of legs resulting in abrupt fall to the
ground. This usually occurs within an hour or two after waking up; sleep deprivation precipitates
this type of epilepsy. Sometimes these patients develop generalized epilepsy at a later date.

What are febrile seizures?

It is commonly seen in children (6 months to 5 years) and is always accompanied by fever. Child is
normal in between and has normal development. It is a benign condition and generally does not
require long-term prophylaxis with anti-convulsants.

What is hot water Epilepsy?

This is peculiar reflex epilepsy occurring in south India. It occurs immediately following hot water
especially head bath. One should avoid hot water bath to prevent it and then consult a neurologist.

What should be done during a fit?

Convulsive seizures cannot be stopped or altered, so the best thing to do is to follow these
guidelines.
1. Try to stay calm
2. Check the time to monitor how long the seizure lasts, as prolonged seizures may require
emergency medical help.
3. Prevent others from crowding around.
4. Put something soft under the person's head - such as a jacket or cushion - to prevent injury;
loosen tight clothes around neck: tie, collar, necklaces etc.
5. Only move the person if they are in a dangerous place, for example at the top of a flight of
stairs or in the road. Move things away from them if there is a risk of injury.
6. Do not attempt to restrict or restrain the convulsive movements as this may cause injury to
the person or yourself
7. Do not put anything in the person's mouth. There is no danger of them swallowing their
tongue during a seizure and you may damage their teeth.
8 Don’t give any iron rods, keys to hold as it may injure him/her.
9 If the person is known epileptic and the seizure lasts longer than 5 minutes or repeats without
full recovery, call the ambulance.
10 If it is the first seizure, call the ambulance.
11 Video record the onset of the event in mobile phone
 National Institute of Mental Health & Neurosciences
(Institute of National Importance), Bengaluru-560029
राष्ट्रिय मानष्ट्िक स्वास्थ्य एवं तंष्ट्िका ष्ट्वज्ञान िंस्थान, (राष्ट्रिय महत्व का िंस्थान), बेंगलूर -
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ರಾಷ್ಟ್ರೀಯ ಮಾನಸಿಕ ಆರ ೀಗ್ಯ ಮತ್ತು ನರ ವಿಜ್ಞಾನ ಸಂಸ್ ೆ, (ರಾಷ್ಟ್ರೀಯ ಪ್ಾಾಮತಖ್ಯತಾ ಸಂಸ್ )ೆ , ಬ ಂಗ್ಳೂರತ-
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What to do once the convulsions have stopped?

1. Roll the person onto their side
2. Wipe away any excess saliva and if breathing is still labored, check that nothing is blocking
the throat such as dentures or food.
3. Do all you can to minimize any embarrassment. If the person has been incontinent deal
with this as sensitively as possible.
4. Stay with the person giving reassurance until they have fully recovered.
5. Do not give the person anything to eat or drink until they are fully recovered.

What are common tests?

A number of investigations, including blood tests, an electroencephalogram (EEG) and scans such
as Computerized Tomography (CT) or Magnetic Resonance Imaging (MRI) may provide
additional information. However, these tests cannot confirm or rule out a diagnosis of epilepsy.

I have had seizures, but the EEG and brain scan are normal. Why have I been diagnosed
with epilepsy?

Diagnosis of epilepsy is based on history. While tests such as EEGs and brain scans can be useful,
they cannot, on their own, say if someone has or doesn't have epilepsy. Electrical activity in the
brain may be normal between attacks in about 40%. The brain scan looks for structural
abnormalities within the brain. It does not diagnose epilepsy but may help to explain why seizures
are happening. If it is negative, this means that no cause for the seizures has been found. It does not
mean that.

What is the treatment for epilepsy?

About 75% of people with epilepsy will have their epilepsy controlled with anti-epileptic drugs
(AED). AEDs prevent seizures from happening, but don't cure epilepsy. There are many AEDs,
and choice of AED depends on the type of seizures. The first line AEDs are: Phenytoin,
Phenobarbitone, Carbamazepine, Sodium valproate. When seizures are not controlled with these
AEDs, newer AEDs are used like: clobazam, lamotrigine, topiramate, vigabatrin, levetiracetam,
tiagabine etc.

Does it matter when I take my medication?

To work properly, medication needs to be taken regularly as prescribed.

If my seizures get worse, can I take extra medication?

No one should take extra medication unless advised to do so by the doctor.

What are the side effects of epilepsy medications?

As is true of all drugs, the medications used to treat epilepsy have side effects. The occurrence of
side effects depends on the dose, type of medication, and length of treatment. The side effects
worsen with higher doses but tend to be less severe with time as the body adjusts to the medication.
Anti-epileptic drugs are usually started at lower doses and increased gradually to make this
adjustment easier.
Side effects of epilepsy drugs can include blurry or double vision, fatigue, sleepiness, unsteadiness,
stomach upset, skin rashes, low blood cell counts, liver problems, swelling of the gums, hair
loss, weight gain, and tremor. Inform your doctor to address the side effects.
 National Institute of Mental Health & Neurosciences
(Institute of National Importance), Bengaluru-560029
राष्ट्रिय मानष्ट्िक स्वास्थ्य एवं तंष्ट्िका ष्ट्वज्ञान िंस्थान, (राष्ट्रिय महत्व का िंस्थान), बेंगलूर -
560029
ರಾಷ್ಟ್ರೀಯ ಮಾನಸಿಕ ಆರ ೀಗ್ಯ ಮತ್ತು ನರ ವಿಜ್ಞಾನ ಸಂಸ್ ೆ, (ರಾಷ್ಟ್ರೀಯ ಪ್ಾಾಮತಖ್ಯತಾ ಸಂಸ್ )ೆ , ಬ ಂಗ್ಳೂರತ-
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What are the precautions that I should follow while on medication for epilepsy?
Must not miss the medication even once.
Must be regular with the timing of the medication.
Must have at least 6-7 hours of sleep.
Must not consume alcoholic beverages.
Must not do swimming, mountain climbing, other dangerous activities.
Must always tell the treating physician about the epilepsy medication, while receiving a drug for
another ailment.

Does epilepsy or the drugs used for epilepsy cause brain damage?
Certainly not. Epilepsy by itself does not cause brain damage, in fact it is other way round.
Children born with various degrees of brain damage have retarded brain development as well as
epilepsy. The antiepileptic drugs per se do not cause brain damage.

Does epilepsy disappear on its own without any treatment?

Yes, it does. It is reported that in 15-20% of epilepsy has spontaneous remission. This means
without any treatment the epilepsy may stop on its own. Such cases are often quoted claiming a
cure by alternate methods of treatment. However, the difficulty is to identify who will have
spontaneous remission and who will not, so everyone gets treated.

How long will I have to continue to take my medication?

The length of time will depend on the type and duration of epilepsy. If a person has not had
seizures for more than 2 years, the neurologist may discuss, to withdraw medication gradually
depending on cause and type of epilepsy.

What is refractory epilepsy?

Refractory epilepsy means that the person’s seizures cannot be controlled with medication. It is
also called “drug-resistant”, “intractable”, or simply “uncontrolled”. Some of them do well with
epilepsy surgery.
What is Epilepsy surgery?
About 20% of patients with epilepsy may not respond even to multiple drugs. These patients need
to be worked up for epilepsy surgery. About 50% of these patients may benefit with specialized
surgical treatment. If selection of patients is good, more than 50% have seizure free post-
operatively.

Can people die from epilepsy?

Epilepsy by itself does not cause death but accident due to seizure may result in death (e.g. road
traffic accident)

Is there anything I can do to help reduce my seizures?

Taking anti-epileptic medication regularly as prescribed helps to get the best possible control of
seizures. It is also helpful to try to identify factors, which may trigger seizures, such as lack of
sleep or too much alcohol, and to avoid these where possible.
 National Institute of Mental Health & Neurosciences
(Institute of National Importance), Bengaluru-560029
राष्ट्रिय मानष्ट्िक स्वास्थ्य एवं तंष्ट्िका ष्ट्वज्ञान िंस्थान, (राष्ट्रिय महत्व का िंस्थान), बेंगलूर -
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ರಾಷ್ಟ್ರೀಯ ಮಾನಸಿಕ ಆರ ೀಗ್ಯ ಮತ್ತು ನರ ವಿಜ್ಞಾನ ಸಂಸ್ ೆ, (ರಾಷ್ಟ್ರೀಯ ಪ್ಾಾಮತಖ್ಯತಾ ಸಂಸ್ )ೆ , ಬ ಂಗ್ಳೂರತ-
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Is it safe for me to use a computer and watch television?

Most people with epilepsy, can safely use a computer and watch television. Only when epilepsy is
“photosensitive”, which means that their seizures are triggered by flickering or flashing lights it
advised to avoid triggers.

My son has epilepsy. Is it safe for him to have vaccinations?

Current knowledge suggests that there is no connection between the vaccine and epilepsy.

I am finding it harder to remember things since I developed epilepsy. Why is this?

Neither epilepsy nor AED affect memory, only if seizures are very frequent or higher dosage of
AED is used, memory may be effected temporarily.

Would complementary treatments help my epilepsy?

The most successful treatment for epilepsy is anti-epileptic medication. Other treatments are
normally seen as additional to, rather than an alternative, to medication. At the moment there is
little evidence for the effectiveness of complementary therapies.

How about driving?

If you have active epilepsy you should not drive. As per current Motor Vehicle Act in India, people
with epilepsy cannot get a driving license. However, in the western countries if a person is free
from seizures for six months to two years even while taking Anti Epileptic Drugs driving license is
issued to drive personal vehicle.

I have just been diagnosed with epilepsy. Will I be able to get and keep a job?
Nearly all jobs are open to people with epilepsy and most people with epilepsy can work in any
area they choose. There are restrictions in the armed services, for people who are still having
seizures or are taking medication for seizures. Work involving unguarded machinery, heights, open
water or fires is not recommended if seizures are not controlled.

Are there any food restrictions?

Absolutely Not. None of the food items vegetarian or non-vegetarian food, fruits or vegetables
have any role to play in controlling or exaggerating epilepsy.

Can a patient with epilepsy play games and take part in any kind of sports?
The answer is YES, in a large number of patients. As a basic principle patient with epilepsy should
avoid such activities wherein if the person gets an attack, his/her life should not be in danger due to
accident. So obviously activities like swimming, motor racing, rock climbing are avoided. Even
here if the patient is fit free for a couple of years one can participate in the sports. All other games
like football, cricket can be played without any problem. There are very famous international
snorts persons living with epilepsy.

Epilepsy and marriage

Can a person with epilepsy get married?

Of course, yes. They can get married, have normal sexual life and children. AEDs should be
continued. The future partner should be well informed about illness and emphasize, the need to
continue AEDs.
 National Institute of Mental Health & Neurosciences
(Institute of National Importance), Bengaluru-560029
राष्ट्रिय मानष्ट्िक स्वास्थ्य एवं तंष्ट्िका ष्ट्वज्ञान िंस्थान, (राष्ट्रिय महत्व का िंस्थान), बेंगलूर -
560029
ರಾಷ್ಟ್ರೀಯ ಮಾನಸಿಕ ಆರ ೀಗ್ಯ ಮತ್ತು ನರ ವಿಜ್ಞಾನ ಸಂಸ್ ೆ, (ರಾಷ್ಟ್ರೀಯ ಪ್ಾಾಮತಖ್ಯತಾ ಸಂಸ್ )ೆ , ಬ ಂಗ್ಳೂರತ-
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Epilepsy and Oral Contraceptives

Some type of AED may interfere with contraceptive pills, hence you should consult your doctor
when taking oral pills.
How can preconception counseling help?
Preconception counseling helps women to be fully informed about the effects of their epilepsy and
anti-epileptic drugs (AEDs), on themselves and their unborn baby. Women who take AEDs to
control their seizures may need to be aware that their medication could affect their baby. They also
need to consider the possible effects of not taking medication. If a woman has seizures when she is
pregnant, there is a risk of injury to her and to her unborn baby. The doctor will discuss these
issues during preconception counseling and try to give minimum dosage of AED. Ideally, epilepsy
treatment should be looked at before becoming pregnant. If a woman is still having seizures, her
AEDs may be kept on the lowest dose that still gives the best control of her seizures. If a woman
has been seizure free for two or three years, she may be advised to slowly stop her AEDs.

What happens if the pregnancy was not planned?

This is most common scenario. If a pregnancy is not planned, there is no opportunity to have
preconception counseling. When this happens, it is recommended that the woman carries on taking
her AEDs and starts taking folic acid. It is also recommended that she see her doctor as soon as
possible.

Does AED in pregnant woman cause birth defects in child?

The baby will be exposed to the mother's AEDs while in the womb and there is a risk that her
baby may be born with a birth defect or developmental abnormality. The risk of a major birth
defect in normal population about 3%. If she is taking one AED, the risk is around 3- 7% and it
rises to around 15% if two or more AEDs on higher doses are taken. At the moment sodium
valproate appears to carry greater risks than other AEDs.
If the baby's father has epilepsy, his epilepsy and AEDs will not affect the baby's development
Why is folic acid recommended?
Folic acid is a vitamin that helps a developing baby's spine to form. It is recommended that women
take a supplement of folic acid ideally before conception and through pregnancy. This may help to
reduce the risk of birth defects.

What is ante-natal screening?

For all pregnant women, ante-natal screening of the baby in the womb is used to check the baby's
development. Screening such as ultrasound scans can be done at certain intervals throughout the
pregnancy. Some women have an alpha-feto protein blood test to find out the risk of the baby
having spina bifida. Pre-natal screening can only identify some types of birth defect or
developmental abnormalities but is not 100% reliable.

Why is vitamin K prescribed?

Vitamin K is important for blood clotting. AEDs can sometimes affect the level of vitamin K in the
body. It is often recommended to take 10mg of vitamin K1 daily during the last month of
pregnancy. This aims to reduce the risk of bleeding problems in the baby during and after labor. .

Can we prevent Epilepsy?

Yes, by preventing brain damage a) during birth with hospital delivery b) avoid road traffic
accidents by wearing helmets, seat belts etc. c) prevent brain infections like tuberculosis and
neurocysticercosis and d) stroke prevention.
 National Institute of Mental Health & Neurosciences
(Institute of National Importance), Bengaluru-560029
राष्ट्रिय मानष्ट्िक स्वास्थ्य एवं तंष्ट्िका ष्ट्वज्ञान िंस्थान, (राष्ट्रिय महत्व का िंस्थान), बेंगलूर -
560029
ರಾಷ್ಟ್ರೀಯ ಮಾನಸಿಕ ಆರ ೀಗ್ಯ ಮತ್ತು ನರ ವಿಜ್ಞಾನ ಸಂಸ್ ೆ, (ರಾಷ್ಟ್ರೀಯ ಪ್ಾಾಮತಖ್ಯತಾ ಸಂಸ್ )ೆ , ಬ ಂಗ್ಳೂರತ-
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Famous person list

Many famous and well known people have or did have epilepsy, here is a list of some of these
people who suffered epilepsy in their lives: Sir Isaac Newton, Aristotle, Napoleon Bonaparte,
Alexander , Alfred Nobel, Leonardo Da Vinci, Martin Luther, Pythagoras , Theodore Roosevelt,
Jonty Rhodes.

How can I advocate for epilepsy?

Answer: There are lots of ways! One of the easiest ways is to talk about it. One of the most
difficult challenges that people with epilepsy face is the stigma. By helping to spread awareness
and educating others, you can help erase the misconceptions that exist about epilepsy. Not only
that but voicing your concern – especially to the government – is another big way to advocate for
epilepsy.

Can people with epilepsy take COVID-19 vaccines?

Vaccines against COVID19 are currently being approved and becoming available. There is
currently no evidence to suggest that having epilepsy is specifically associated with a higher risk of
side effects from a COVID-19 vaccine. For people with epilepsy, the risk of COVID-19 infection
and potential complications far outweighs the risk of side effects from a COVID-19 vaccine. As
with other vaccines however, a fever can develop after a COVID-19 vaccination. This could lower
the seizure threshold in some people. Antipyretics (e.g. paracetamol/acetaminophen) taken
regularly for 48 hours after the vaccination (or for the duration of fever) will minimize this risk.
Before you receive a COVID-19 vaccine, make sure to let your vaccination provider know that you
have epilepsy, as well as any other important medical information, such as:
 Allergies, especially an allergy to any ingredient in the vaccine
 Allergic reactions to prior vaccines (e.g. flu vaccine)
 Current or recent fever or infection
 All medications you are taking, especially medications that suppress the immune system
(e.g. immunomodulatory or immunosuppressive medicines) or anticoagulants.
 If you are pregnant or nursing, or plan to become pregnant
As with any vaccine, you should not receive the COVID-19 vaccine if you are allergic to any of its
ingredients. You should not receive a second dose if you had an allergic reaction to the first dose.